In preparing this report, the
Federal Interagency Forum on Aging-Related Statistics (Forum) identified several areas where more data are needed
to support research and policy efforts. The Forum's observations
complement suggestions that were reported at a National Academy of
Sciences' workshop on how to improve data on aging.56
Although a respondent's
age is almost always collected in single-year increments, it is often reported
in categories. Typically, the standard age categories used by statisticians and
researchers to describe and analyze the older population are 65-74, 75-84, and
85 and over. However, because the average age of the 85 and over group has
steadily increased over the past 15 years, it is now necessary to consider
replacing the 85 and over age category with two new categories: 85-94 and 95
and over. This change may require sampling strategies to ensure an adequate
sample size in these older age groups.
Although the number of studies
that oversample older minorities has been increasing,
the amount and quality of data available to researchers are still limited.
There is a lack of basic data about aging minority populations, largely because
of the small sample sizes of these populations and language barriers that
prevent certain racial and ethnic groups from participating in surveys. The
increasing number of older immigrants highlights the need to collect data on
nativity and to analyze generational differences in health and well-being.
Policy changes and cultural perceptions have brought increasing complexity to
the definition and measurement of race and
ethnicity. Currently, only the decennial census and the American Community
Survey have a sufficient number of cases to
make reliable estimates of the smallest racial and ethnic groups, but even
these data lack critical health and disability information that is essential to
adequately study the well-being of older minorities.
Information on trends in
disability is critical for monitoring the health and well-being of the older
population. However, the concept of disability encompasses many different
dimensions of health and functioning and complex interactions with the
environment. Furthermore, specifi c definitions of disability are used by some government
agencies to determine eligibility for benefits.
As a result, disability has been measured in different ways across surveys and
censuses, and this has led to conflicting
estimates of the prevalence of disability. To the extent possible,
population-based surveys designed to broadly measure disability in the older
population should use a common conceptual framework. At a minimum, questions
designed to measure limitations in activities of daily living (
ADLs), instrumental activities of daily living (
IADLs), physical functioning, and other activities should
use consistent wording and response categories whenever possible.
Performance-based measures are another way to measure disability but often
require additional survey resources. Studies using vignettes to measure
disability are showing promising results.57
Several
interagency efforts currently are underway to compare disability measures
across surveys and to assess the possible reasons for the different estimates.
Federal agencies are working together to refine
the way disability is measured for older people as well as to collect more
systematic information on assistive technologies.
Because of the complex
methodological issues involved with collecting data from people in institutions
(along with the associated high data collection costs), the institutionalized
population is often excluded from large national household-based surveys.
According to the U.S. Census Bureau, the institutionalized population
"includes persons under formally authorized, supervised care or custody
in institutions at the time of enumeration. Such persons are
classified as 'patients or inmates' of an
institution regardless of the availability of nursing or medical care, the
length of stay, or the number of persons in the institution." 58 Because
this definition includes people in nursing
homes, psychiatric hospitals, and long-term care hospitals for the chronically
ill, mentally retarded, and physically handicapped,59
this exclusion can become a critical issue for researchers who are interested
in studying the entire older population. This is especially true for the older
age groups. For example, in 2002, only 83 percent of the population age 85 and
over was included in the civilian noninstitutionalized
population (see "About This Report," page VI).
Distinguishing
between types of long-term care facilities and the transitions that occur
between them
The use of assisted-living
facilities, group homes, continuing-care retirement communities, and other
types of residential settings as alternatives to long-term care in a nursing
home has grown over the last 15 years. For the purposes of demographic surveys,
the U.S. Census Bureau typically defines people
living in these settings as being part of the noninstitutionalized
population.59 Current surveys and censuses that include information
on the noninstitutionalized population (as many
federally-sponsored surveys do) rarely distinguish between these types of
noninstitutional long-term care residences (or have
sufficient sample size to do so). As a result, there
is a lack of information on the characteristics of older people in different
community-based residential care settings and their service use and health care
needs. Perhaps more importantly, there is little information on the costs,
duration, and transitions into and between different long-term care settings.
This is made more diffi cult by the exclusion
of the institutionalized population in many surveys, which precludes measuring
transitions between community-based and institutional-based long-term care
residential settings. Working in conjunction with several other interagency
efforts, the Forum is collecting key data elements from federally-sponsored
surveys to produce a compendium that provides detailed information on how the
surveys include or exclude institutions from their sampling frames. Researchers
and policymakers should consider developing consistent definitions
of residential settings and include these data items on surveys.
The Institute of Medicine reports a "paucity of research" on elder abuse and neglect, with most prior studies lacking
empirical evidence.60 In fact, there are no reliable national
estimates of elder abuse, nor are the risk factors clearly understood. Most
studies have been cross-sectional and have not investigated the history of
abuse. The need for a national study of elder abuse and neglect is supported by
the growing number of older people, increasing public awareness of the problem,
new legal requirements for reporting abuse, and advances in questionnaire
design. In 2003, the National Research Council published a report that
highlighted the need for funding agencies to make a long-term commitment to
funding elder mistreatment research.61
Gathering
information to understand the reasons for improvements in life expectancy and
functioning
One of the major successes of
the 20th century is the increase in longevity and improved health of the older population.
As life expectancy increases, the importance of effectively treating chronic
diseases and reducing disability becomes ever greater. Understanding the
underlying reasons for the improvements in longevity and functioning is a
critical first step to further advances toward
these goals. To this end, information is needed to understand the long-term
improvements in the health of the older population stemming from better
nutrition, increased access to medical care, improvements in the public health infrastructure,
changes in lifestyles, better treatment of chronic diseases through new medical
procedures and pharmaceuticals, and use of assistive devices and other
technology.
The percentage of Medicare
enrollees in Health Maintenance Organizations (HMOs) peaked at 21 percent in
1999 and then declined; however, recent increases in payments to managed care
plans under the Medicare Prescription Drug Improvement and Modernization Act
are expected to increase enrollments in HMOs. To date little information has
been available on the use of health care services by Medicare enrollees who are
in HMOs. The lack of such information leaves a major gap in our knowledge about
the older population's use of care, and the gap is likely to become more
serious.
Collecting data on economic
well-being is often a difficult task. Many
survey respondents either do not know their incomes or are unwilling to share
this information with interviewers. This can result in missing data for a large
proportion of respondents. A related problem with the collection of economic
data is that most surveys use only income-based measures. This type of survey
methodology does not capture the accumulated wealth (including the value of
future pension payments) and assets on which many older people rely. New
methods to gather income and wealth data are coming into use and are being
refined, and their use should be encouraged in
surveying older people. These methods are aimed at providing a better
understanding of the total financial picture of
older Americans facing retirement and those already retired,
specifically at including information on
individual retirement accounts and 401(k) and Keogh plans. While efforts are
underway at a number of Federal agencies to change or improve the way income
and wealth data are collected, it still remains a challenge to collect these
data without adding to respondent burden.
Gathering
information on the impact of transportation needs on the quality of life of
older Americans
While much is known about the
safety issues of crash involvement and fatality rates of older people, more
information is needed on the effects of transportation on the quality of life.
The ability to move freely from place to place, while often taken for granted,
is as crucial to the well-being of older people as it is to the rest of the
population. For example, access to quality health care is effectively removed
if an older person cannot get from his or her home to a medical facility.
Although the Bureau of Transportation Statistics collected this type of
information in the 2001 National Household Travel Survey, an ongoing data collection
effort is needed to continue to monitor the number of trips older people take
and the types of transportation they use. This critical information will aid
policymakers in planning for the transportation needs of older Americans.
Accounting for
uncertainties in population projections that assess the size of the older
population
Population estimates and
projections are used to assess the size of a population. Although estimates
generally provide figures for the present and
the past, projections estimate the size, composition, and distribution of the
future population. Imbedded in population projections are assumptions about
future trends in fertility, mortality, and migration. Different assumptions
about these demographic processes can result in different projections of the
future size of the population. Some researchers, for example, predict that
death rates at older ages will decline more rapidly than the death rates
assumed in the U.S. Census Bureau's current projections. This could
result in the older population growing at a faster pace than is currently
projected.2-4 The U.S. Census Bureau is currently working on
stochastic population projections that include confidence
intervals to model the uncertainty of the agency's projections. It may be
useful to be aware of alternative projections of the older population when
creating policies and programs.
More data are needed at the
State and local levels to help governments, communities, and organizations
better monitor the health and economic status of their older populations. While
there are a limited number of data collection efforts that yield reliable
estimates at the State level (e.g., American Community Survey, Behavioral Risk
Factor Surveillance System, and Local Employment Dynamics Program), more
comprehensive data collection efforts are needed to accurately assess the
wellbeing of older Americans within and between the States.
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